tongue cancer

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lhovey
lhovey Member Posts: 12
edited December 2022 in Head and Neck Cancer #1

I was recently diagnosed with tongue cancer.  I had part of my tongue removed and a neck dissection.  I would like to connect with others who have been diagnosed tongue cancer.

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  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #2
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    Base of Tongue cancer here

    lhovey,

    I am sorry that you find yourself here on this site, but it is an active site with many knowledgeable people that will answer your questions. I found this site after I had completed my Surgery and Radiation treatments. 

    Like you, I had part of my tongue removed (Base) with a Radical Neck Dissection with over 30 Lymphnodes removed and SCM.

    My Surgery and Treatments were in 2004, I will try to answer some of your questions if I can. I did NOT have Chemo as my Surgeon stated that he got all the cancer and the Radiation was to clean up any stray Cells. Chemo was to be a backup in the event I had any future issues with the Base of Tongue cancer.

    My Best to You and Everyone Here

  • Tonita
    Tonita Member Posts: 197 Member
    #3
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    Me too

    I had a tumor removed from the side of my tongue which has forever changed the shape and "comfort" of it.  42 lymph nodes removed.  No other treatment and I'm two years out from surgery. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    Welcome

    Hi and welcome to the H&N forum.  You have definitely taken the treatment plunge.  I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  My treatment plan has taken me to year 6 (bless my doctors, bless  this site).

    Be happy, stay in the game, move forward.

    M

  • swopoe
    swopoe Member Posts: 492
    #5
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    My husband was diagnosed with

    My husband was diagnosed with tongue cancer in October 2015. His was stage 1, HPV- with perineural invasion. He had part of his tongue removed and a neck dissection too. No nodes were involved. He also had chemo (cisplatin) and rads. He is doing great at this point. Eats everything, except for very spicy foods and chocolate, works full time, and is back to normal. He has a scar on his neck but that is about it. He was lucky that he was able to work through his rads and chemo. If you have any questions, just ask. This site is full of amazing people who will help you get through!

  • ProustLover
    ProustLover Member Posts: 121 Member
    #6
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    Nice to meet you, lhovey..

    Nice to meet you, lhovey...you're at the right place for good info and friends. Click on my name for a full profile of my husband's encounter with tongue cancer (2016...stage 1...HPV+) which metasticized to neck Oct.2017.  We'll try to help with any info we can...hang in there!

  • patricke
    patricke Member Posts: 570
    #7
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    AM THERE, DO'IN THAT

    Hey Ihovey,

    I'm sorry to hear that you have joined our crew, but when one has been given the challenge, this is one of the best places for support, encouragement, and information. I had my battle with the beast in 9/2000 due to base of tongue cancer, and had a partial glossectomy and neck dissection too.  I also got the ever popular radiation treatment (35 visits to the dungeon), but no chemo (thankfully). I always thought that the radiation techs should have worn black hoods, because I always felt like I was going into a dungeon for torture. Treatmeant and recovery are full of ups and downs, with lots of challenges as you create your new normal. The watch words are patience, persistence, and perseverance, this is a marathon, not a sprint (as I am all too often want to say, but it is true). It is important to maintain an overall positive attitude, be flexible, and creative as you adapt to the changes in your life. In time you will establish a new normal and get back to the life and activities that you enjoyed before the battle, so it is also important to keep your eyes on the prize. After my dance in the surgery suite I could barely walk around the block, which was devastating for someone who (that would be me) has been a runner almost forever.  In time I was able to hit the road again, and run a couple of half marathons with my PEG tube. I was also get back out into the surfing wave lineup, also with my PEG tube (duck taped to my chest), to re-experience the thrill of riding waves.  So, hang in there and you will get back to your life again too; it just takes time...  Lastly, my mantra, to get me through the tough times, was and is "I Can Do This," and so can you!  I wish you the best on your journey.  Keep It Mov'in Forward.   

    PS:  There is a Facebook site for Laryngectomy-Glossectomy Support (which is what it is called), that you might want to check out at some point in time.  It is another great place for support and information.    

    Patrick       

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    edited April 2018 #8
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    Hang in buddy

    Hi Ihovey,

    My mother was diagnosed with T2N1 bot cancer in end of Jan. She had 1/3 tongue replaced and had a partial neck dissection. Was supposed to go a total of 35 Radiations, wouldnt say it was easy. The radiation had taken a toll on her health. Due to which we had to stop midway for 10 days. We are back at it again but the do plan to end at 20. Some things that helped her was buttermilk, apple vinegar witb water in the morning and at night. We started giving her a nice rich berries smoothies which is also helping her. 2nd week of the treatment we lost all hope for her to continue. Name any problem associated with radiation and she had it. After being in the hospital for 6 days she is doing bette. Wish we didn't have to start it again but have 7 more to go. All I want to say is and in there, it gets really bad but trust me it gets better soon. You can PM me if you want to know anything else, would be happy to help! 

    More strength to you

    Aanchal

  • Tilly26
    Tilly26 Member Posts: 30
    #9
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    MarineE5 said:

    Base of Tongue cancer here

    lhovey,

    I am sorry that you find yourself here on this site, but it is an active site with many knowledgeable people that will answer your questions. I found this site after I had completed my Surgery and Radiation treatments. 

    Like you, I had part of my tongue removed (Base) with a Radical Neck Dissection with over 30 Lymphnodes removed and SCM.

    My Surgery and Treatments were in 2004, I will try to answer some of your questions if I can. I did NOT have Chemo as my Surgeon stated that he got all the cancer and the Radiation was to clean up any stray Cells. Chemo was to be a backup in the event I had any future issues with the Base of Tongue cancer.

    My Best to You and Everyone Here

    Thanks for sharing

    this is the plan my husband followed! Thank you for sharing! And I see it’s been over 10 years for you! This makes my heart so happy! 

  • utfandg
    utfandg Member Posts: 6
    #10
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    It can be beat

    I have been battling tongue cancer for 23 years. 4/4/18 we replaced 50% of my tongue with a radial arm free flap. 

     

  • lhovey
    lhovey Member Posts: 12
    #11
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    Tonita said:

    Me too

    I had a tumor removed from the side of my tongue which has forever changed the shape and "comfort" of it.  42 lymph nodes removed.  No other treatment and I'm two years out from surgery. 

    Tonita, Did you have a neck

    Tonita, Did you have a neck dissection with the removal of your lymph nodes?  How are you doing with lymph drainage?  Do you have any tips?

    Lori

  • lhovey
    lhovey Member Posts: 12
    #12
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    MarineE5 said:

    Base of Tongue cancer here

    lhovey,

    I am sorry that you find yourself here on this site, but it is an active site with many knowledgeable people that will answer your questions. I found this site after I had completed my Surgery and Radiation treatments. 

    Like you, I had part of my tongue removed (Base) with a Radical Neck Dissection with over 30 Lymphnodes removed and SCM.

    My Surgery and Treatments were in 2004, I will try to answer some of your questions if I can. I did NOT have Chemo as my Surgeon stated that he got all the cancer and the Radiation was to clean up any stray Cells. Chemo was to be a backup in the event I had any future issues with the Base of Tongue cancer.

    My Best to You and Everyone Here

    Thanks

    Thank you for the information and thank you for your service!!  I am curious what others have gone through as far as lymph drainage (helpful hints) and nerve pain (restoring nerve health).  Any information you have with those two areas would be helpful!  There is comfort in knowing you are not alone.

     

  • lhovey
    lhovey Member Posts: 12
    #13
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    CivilMatt said:

    Welcome

    Hi and welcome to the H&N forum.  You have definitely taken the treatment plunge.  I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  My treatment plan has taken me to year 6 (bless my doctors, bless  this site).

    Be happy, stay in the game, move forward.

    M

    Thanks!  You have had quite

    Thanks!  You have had quite the journey!  So happy you are still in the game Laughing.   I changed hospitals and I am lucky enough to live near the Mayo Clinic in Rochester, MN so that is where I am doctoring know.  I love it there.  I feel very confident in my health care team.

  • lhovey
    lhovey Member Posts: 12
    #14
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    swopoe said:

    My husband was diagnosed with

    My husband was diagnosed with tongue cancer in October 2015. His was stage 1, HPV- with perineural invasion. He had part of his tongue removed and a neck dissection too. No nodes were involved. He also had chemo (cisplatin) and rads. He is doing great at this point. Eats everything, except for very spicy foods and chocolate, works full time, and is back to normal. He has a scar on his neck but that is about it. He was lucky that he was able to work through his rads and chemo. If you have any questions, just ask. This site is full of amazing people who will help you get through!

    Thanks, swopoe!

    I am so glad everything went well with your husband and his treatments.  It means a lot to hear from others!!!!

  • lhovey
    lhovey Member Posts: 12
    #15
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    Aanchal Kanodia said:

    Hang in buddy

    Hi Ihovey,

    My mother was diagnosed with T2N1 bot cancer in end of Jan. She had 1/3 tongue replaced and had a partial neck dissection. Was supposed to go a total of 35 Radiations, wouldnt say it was easy. The radiation had taken a toll on her health. Due to which we had to stop midway for 10 days. We are back at it again but the do plan to end at 20. Some things that helped her was buttermilk, apple vinegar witb water in the morning and at night. We started giving her a nice rich berries smoothies which is also helping her. 2nd week of the treatment we lost all hope for her to continue. Name any problem associated with radiation and she had it. After being in the hospital for 6 days she is doing bette. Wish we didn't have to start it again but have 7 more to go. All I want to say is and in there, it gets really bad but trust me it gets better soon. You can PM me if you want to know anything else, would be happy to help! 

    More strength to you

    Aanchal

    Thanks!

    I hope the last treatments went okay.  It sure doesn't sound easy to go through.  Luckily, at this point I don't need chemo or radiation!!!!  I hope all is going well for you and your mother.

    Thinking about you!

  • lhovey
    lhovey Member Posts: 12
    #16
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    utfandg said:

    It can be beat

    I have been battling tongue cancer for 23 years. 4/4/18 we replaced 50% of my tongue with a radial arm free flap. 

     

    Wow!

    I hope your recovery from the tongue replacement is going okay.  You are an inspiration!!  Thank you for sharing your story!

  • lhovey
    lhovey Member Posts: 12
    #17
    Options
    ProustLover said:

    Nice to meet you, lhovey..

    Nice to meet you, lhovey...you're at the right place for good info and friends. Click on my name for a full profile of my husband's encounter with tongue cancer (2016...stage 1...HPV+) which metasticized to neck Oct.2017.  We'll try to help with any info we can...hang in there!

    Thanks!

    Thank you so much!

  • lhovey
    lhovey Member Posts: 12
    #18
    Options
    patricke said:

    AM THERE, DO'IN THAT

    Hey Ihovey,

    I'm sorry to hear that you have joined our crew, but when one has been given the challenge, this is one of the best places for support, encouragement, and information. I had my battle with the beast in 9/2000 due to base of tongue cancer, and had a partial glossectomy and neck dissection too.  I also got the ever popular radiation treatment (35 visits to the dungeon), but no chemo (thankfully). I always thought that the radiation techs should have worn black hoods, because I always felt like I was going into a dungeon for torture. Treatmeant and recovery are full of ups and downs, with lots of challenges as you create your new normal. The watch words are patience, persistence, and perseverance, this is a marathon, not a sprint (as I am all too often want to say, but it is true). It is important to maintain an overall positive attitude, be flexible, and creative as you adapt to the changes in your life. In time you will establish a new normal and get back to the life and activities that you enjoyed before the battle, so it is also important to keep your eyes on the prize. After my dance in the surgery suite I could barely walk around the block, which was devastating for someone who (that would be me) has been a runner almost forever.  In time I was able to hit the road again, and run a couple of half marathons with my PEG tube. I was also get back out into the surfing wave lineup, also with my PEG tube (duck taped to my chest), to re-experience the thrill of riding waves.  So, hang in there and you will get back to your life again too; it just takes time...  Lastly, my mantra, to get me through the tough times, was and is "I Can Do This," and so can you!  I wish you the best on your journey.  Keep It Mov'in Forward.   

    PS:  There is a Facebook site for Laryngectomy-Glossectomy Support (which is what it is called), that you might want to check out at some point in time.  It is another great place for support and information.    

    Patrick       

    Thanks, Patrick!

    Thank you so much for your kind words and encouragement!!  I feel so blessed I didn't have to experience the dungeon.  Many people would say to me...you are doing so well, how are you holding it together?  I told them that if I had to have chemo or radiation, then they would see me fall apart.  I watched my mom go through chemo and I would prefer not to experience that first hand.  I have admiration for those of you who have to go through chemo or radiation.  So, bravo to you!!!  You are an inspiration!!  When I feel discouraged I will think about you running your marathon and surfing.  Most of the time I am able to stay positive but I am having trouble with lymph drainage and range of motion of my arm after the neck dissection.  Some days I just feel tired of fighting it.  It is getting better so I will Keep It Mov'in Forward!  I keep hearing my mom's voice saying, "This too shall pass!"

    Thanks for your encouragement!!!!

    L

  • lhovey
    lhovey Member Posts: 12
    #19
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    Neck dissection nerve issues & lymph drainage

    I am searching for ideas to assist the nerves in my neck to heal themselves.  I experience some lymph fluid pooling under my chin above my neck dissection incision.  I have been learning how to assist the lymph fluid to drain, but it hasn't resolved the problem.  The lymph fluid causes difficulty in my speech which is still adjusting after partial tongue removal.  The nerves in my neck go from the feeling of large needles poking to tiny small pin needles poking.  I have some twanging nerves moving across my shoulder.  The latest thing is that when I touch my ear lobe I can feel nerves just below my chin.  It amazes me how things change and it seems like every other week there is something new.  The deep itchy pain that I can't scratch is getting better but that is a very strange feeling.  I wear an Ace bandage around my neck at night and that has helped the amount of lymph fluid.  I use a healing lotion with lavendar to massage my neck and encourage drainage.  Any tips and tricks would be appreciated.

     

  • lhovey
    lhovey Member Posts: 12
    #20
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    Lidocaine

    I have an update.  My blood pressure had gone way up because of the nerve pain so I started doing some research.  I bought some over the counter Lidocaine.  I just got a generic brand but Aspercreme is a brand name.  Once a day, I have been applying it to my neck and shoulder and it has calmed down my nerves or at least I don't feel them constantly all day long.  It has lowered my blood pressure.  It is amazing what the body copes with because now when the nerves begin to "Poke" at me, I realize how much pain they were causing.  It has been a miracle for me and hopefully my nerves will learn to calm down.  If not, at least it lowers my blood pressure.  

  • Tonita
    Tonita Member Posts: 197 Member
    #21
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    lhovey said:

    Tonita, Did you have a neck

    Tonita, Did you have a neck dissection with the removal of your lymph nodes?  How are you doing with lymph drainage?  Do you have any tips?

    Lori

    Yes, had 42 lymph nodes taken

    Yes, had 42 lymph nodes taken.

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